Sometimes I forget our daughter has Epilepsy. But only for a second. We’re incredibly lucky her seizures are suppressed by medications, but it’s impossible to forget the traumatic years when they were not.
Avery’s first major seizure happened when she was three and a half. I shared the story of what happened in every painful detail. I’m sharing the link again HERE. Even after all this time, I find it difficult to read. Even though it was nearly eight years ago now, those seizures just before Avery turned five were brutal.
Every year since she has an EEG to assess the seizure activity in her brain. And every year while we wait for the results we hope for the news that there is no seizure activity or that the electrical abnormalities remain unchanged, in equal measure.
It may sound odd to hope for no improvement, but if her brain activity appears normal the neurologist will take her off anticonvulsants. And this could mean more horrifying seizures.
When neurons discharge inappropriately they cause abnormal electrical impulses in the brain. This results in seizure activity which can lead to abnormal motor activity or convulsions, and loss of consciousness, and if not controlled as soon as possible, brain damage due to a repetitive discharge of neurons. Usually seizure activity last for few seconds to minutes. When it lasts longer, it’s called “status epilepticus.” Avery’s seizures were of that dangerous variety. They wouldn’t stop on their own without medical intervention.
Avery had this year’s annual EEG last week. I posted a photo of this sweet girl sleeping peacefully while electrodes snaking from her head fed squiggly data about her brain onto a computer screen. I deleted it hours later when it occurred to me that this story has become more Avery’s story than mine. Though she says she doesn’t mind, I realize with growing clarity that not every personal moment needs to be shared with the world.
We don’t have the results yet. Waiting is something we’re getting very good at.
Though that year of seizures was awful and it’s caused me anxiety the likes of which I wouldn’t wish on anyone, we are very fortunate. We’ve had a reprieve, unlike so many families of children with chromosome disorders like Avery’s.
As puberty nears, I worry that seizures may break through. Past EEGs have shown electrical abnormalities are moderate (3 on a scale from 1-5). We have been warned that hormonal changes can result in new seizures. So I’m always on edge, watching and waiting.
If you have a child with a seizure disorder, I am so sorry. I’m sorry because I know firsthand how devastating it can be. But there’s hope. New research, new drugs, new therapies on the horizon.
And if you’re at the beginning—the frightening, overwhelming, afraid-all-the-time, beginning—please reach out to somebody who’s been there. Reach out to me if you like. I may not have the answers, but I’m here to listen.
Here are a few of the stories I’ve shared about our experience with Epilepsy:
2009: The First Seizure
Since Avery’s initial diagnosis we’ve had our ups and downs. Mostly ups. Doctors told us that Avery might never walk, or talk but she has proved them wrong by doing both. Tuesday however, after celebrating the great results of her perfect hearing test, things took a nasty turn. I went to wake Avery from her afternoon nap — a nap I let go on longer than usual after a long day of appointments. When I entered her room I found her unconscious. She was limp and covered in vomit. Read more…
2009: Taking A Stand
Last week my husband took the kids to his parent’s while I hosted a party at our house. At 11:30 p.m. he phoned home to tell me an ambulance was there to take Avery to the hospital. She was having a seizure that wouldn’t stop. I met them in the ER. The seizure eventually stopped on its own without medication. After 8 hours, they sent us home and told us to follow-up with our neurologist. The following afternoon, I put Avery down for her nap. Thanks to our family, we now have a video surveillance camera in her room. I could see her lying in her crib on her side, staring, not blinking. I ran to her room as her eyes began repeatedly flicking from the centre, to the right.It was happening again. Read more…
2011 Seizure Salad
Our daughter has Epilepsy. The onset was sudden (at the age of three) and the year it took to bring her life threatening seizures under control was brutal. Read more…
With a relatively sleepless night under our belts, we headed to today’s early morning EEG appointment. The nurses were appropriately impressed by the dark shadows the little patient was wearing under her eyes like a badge of honour. Read more…
2011 Brain Waving
Our beautiful daughter has Epilepsy. I refused to believe it at first, but couldn’t dispute that the squiggly lines on the electroencephalography monitor were indicative of a life threatening seizure disorder. After a year of tweaking her meds, we were thankfully able to control her seizures and Avery has been footloose and (nearly) seizure free for over a year now. Though she still has the occasional absence seizure, the BIG ONES seems to be a distant memory. Read more…
2013 A Peak Inside Her Head
It’s time again; the neurologist scheduled another peek via EEG. If no seizure activity is present, he will wean her off the anti-seizure meds. This is both thrilling and terrifying. “But, what if her seizures come back?!” I protested. She’s fine on the meds. Can’t we just wait a little longer? “We need to give her a chance,” he told me. “You don’t keep someone on medication if they don’t need it.” Read more…
2013 Todd’s Paralysis
After starting meds, the seizures continued, but lessened in severity. Each occurred during sleep. The neurologist believed the transition from one level of sleep into another was some sort of trigger. Then Avery had her first seizure while she was awake. It lasted a few minutes and stopped abruptly, leaving her left side limp, temporarily paralyzed. We thought she had possibly had a stroke. We later learned she had experienced Todd’s Paralysis. Read more…